Just a quick note to update...Parker was admitted into Shands Hospital yesterday. We visited cardiology yesterday for an EKG and Echo-cardiogram. He has been having that feeling again and chest has felt pressure filled and he has had difficulty breathing. Last week his nebulizer treatments seemed to help but not so much this week. After the echo we went and had lunch and you know the saying "no news is good news", so after hanging in Gainesville for a bit we headed home. About half way home we got the call to come back.
Parker has mild pericardial effusion again. The good news is that they feel that it will correct itself and we won't have to drain it. So, for now they are trying to make him confortable and we might increase his oral steroids because of this. But we will see. He is already on a hefty dose. He is also having bad stomach pain and they are also treating that.
Because he is on the RAPPORT study there are some strick rules around medication and we don't want to jepordize the study but of course if he gets any worse we will not hesitate to do what we need to do to keep him safe. He is looking better today, which is good. He definitely has had 2 shots of real drug (rilonocept) because at week 4 kids are guarenteed real drug. However we are pretty certain he was getting placebo the first 4 weeks. He is just into week 5.
I will keep you posted as we know more. Thanks all for continuing your prayers and for keeping us in your thoughts. It means a lot. We are hoping this is a short stay.
Well, at least you caught it early. /Sigh I so hope that the Rilonocept kicks in quickly and it is the miracle you've all been looking for!!! You are all always in my thoughts and prayers.
ReplyDeleteI came across Parker's blog today and read a few of your postings. I am truly saddened and sorry for the pain and suffering Parker has and continues to endure. I also suffer from RA, fibro, diabetes, neuropathy, and a few other issues. I truly believed I had arthritis when I was younger but my parents would continually tell me I was a hypercondriac. Well, in 1999, I was finally diagnosed and yes, it took about 2 years of continous referrals, appointments and tests. I am now 46 and struggle with it daily.
ReplyDeletePlease hug him for me and let him know that his blog is making it around and he is an inspiration to all. I hope he is better very soon and able to enjoy his life as he should.
Thank you for sharing!
Terri